Blood Cancer Westminster Hall Debate 17.01.18

Posted by Sharon on January 18, 2018

As Shadow Minister for Public Health, Sharon spoke on behalf of the Opposition in a debate on blood cancer. In her speech, Sharon raised issues around psychological support and care pathways for blood cancer patients, the need to improve research into drugs and address issues with the appraisal support.

It is a genuine pleasure to serve under your chairmanship, Mr Wilson, and I congratulate the hon. Member for Crawley (Henry Smith) on his good fortune in securing this debate just before the launch of the report by the all-party group on blood cancer, which will take place afterwards. That was very opportune and well done. He made an informative and heartfelt opening speech, and I am sure that he can secure no finer legacy in memory of his mother than what he is achieving in Parliament today. I am sure his whole family are proud of him.

As we have heard throughout this debate, blood cancer is the third biggest cancer killer in the UK, and the fifth most common cancer, with more than 230,000 people living with the disease. For those people and their families—some of whom are here today or watching the debate—action is needed to improve the treatment and support on offer. That includes some of my own constituents who contacted me prior to this debate, and it is for them that we are here today. There is much that we can do to improve treatment and support, as so eloquently put by the hon. Member for Crawley, and others who have spoken today, including my hon. Friend the Member for Coventry North East (Colleen Fletcher), and the hon. Members for Gordon (Colin Clark), for Strangford (Jim Shannon), and for Central Ayrshire (Dr Whitford), who all made excellent speeches.

Blood cancer patients need to see their GP many more times before being referred to hospital than those with other cancers. Indeed, 35% of blood cancer patients had to see their GP three or more times before being referred, compared with only 6% of those with breast cancer, and 23% of those with all other tumour types. Such figures must be the fire beneath that spurs us on to do more, otherwise we will be failing the 230,000 people who live with this disease. Today I want to pick up on three key issues: first, patient experiences, and specifically the “watch and wait” principles of treatment and support; secondly, the improvements needed in research and access to treatments; and finally I will discuss post-stem cell transplant care.

Each year, 5,000 people with slow-growing blood cancers do not start treatment straight away, but instead are placed on a regime called watch and wait. That means that patients are monitored until they reach a point where treatment must start. It can take many years for that to happen, which can add much pressure to a patient’s life, including the psychological struggles​that they might face. That is understandable: it must be excruciatingly difficult for someone to live with a cancer, including a blood-borne one, yet not receive any treatment, even though they know they have the disease.

To help fully understand this struggle, I want to read from a case study that was sent to me by Bloodwise, and written by the blogger who writes the “Diary of a ‘Fake’ Cancer Patient”. It states:

“About a month after diagnosis, I went to pieces and sat in front of my consultant panicking, crying and generally not coping.”

Reading the full case study is harrowing but heart-warming at the same time. That may sound peculiar, but it shows the scale of the struggle that blood cancer patients face under “watch and wait”, and also that when support is offered they can lead as normal a life as possible, and have the support to cope with the disease and the situation in which they find themselves. That is why Labour supports calls for tailored psychological support for patients who are on watch and wait, and it would be welcome if the Minister addressed that point when he replies to the debate.

It would be of great interest to hear from the Minister whether the Government plan to look at the perceived pitfall in the cancer strategy regarding the recovery package, and the failures to take into consideration the unique characteristics of blood cancer, as well as the use of terms such as “beyond cancer” and “post- treatment”, which can be alienating to blood cancer patients. As we know, blood cancers are very different to solid tumour cancers, and that determines the kind of treatment on offer to patients. For blood cancer patients, treatment is not about surgery or radiotherapy; it is about drugs to help to fight their cancer, and importantly, about access to said drugs. It is therefore crucial that innovation and the development of new drugs is encouraged to help improve patient outcomes. The Government must continue to commit to ongoing research to help save lives, and capitalise on our world-leading position as blood cancer research pioneers.

Lots of this work already happens, including charitable investment and collaboration between public bodies. One such example is IMPACT—a £4 million clinical trials programme that is jointly funded by Anthony Nolan, Leuka, and NHS Blood and Transplant services. By 2020, this exciting and much welcomed project will have established 12 clinical trials involving approximately 1,500 patients. It will play an invaluable role in achieving the vision set out in the Government’s life sciences industrial strategy and—most importantly—it will help to save lives. It is of utmost importance that the Government continue their commitment to this work.

We must also consider how the cancer drugs fund works, and how the temporary collection of data to make appraisal decisions can, for some rare blood cancers, lead to insufficiency in collecting robust data, and therefore to negative appraisals for drugs. I have raised concerns in the past about the way we appraise drugs—indeed, I worked with the hon. Member for Central Ayrshire when we were both co-chairs of the all-party group on breast cancer, and we carried out work on some breast cancer drugs, including Kadcyla. It is therefore disappointing, yet not surprising, that we find similar situations when it comes to blood cancer drugs with, for example, the drug ibrutinib being given to patients with mantle cell lymphoma. That drug received a negative appraisal, and later a positive one. That causes unnecessary distress and anxiety for patients, and it is​important that such problems are addressed. I hope that the Minister will give us some steer on when the Government plan to rectify these matters.

Finally, I will touch briefly on the need for support for those living post transplant, and the care that should be on offer to them. It is estimated that by 2020 more than 16,000 people will be living post transplant, and they will therefore be more exposed to physical and psychological effects, such as graft-versus-host disease, depression and prolonged duress stress disorder. Although stem cell transplants can save a person’s life—that is fantastic—it is important that when someone’s life is saved, they can live it to its fullest. Sadly, only 54% of those who need psychological support actually receive it. That is down to the commissioning of post-transplant services not working for all patients, especially at the 100-day cut-off after a transplant, when responsibility for services moves from NHS England to CCGs, and therefore leads to gaps in the care and support provided. Is the Minister aware of that, and will he commit to looking at how that gap can be filled so that patients receive the best post-transplant support possible?

This debate has been incredibly important, and I am sure it has given the Minister a lot to think about. I hope that when he gets back to his office, he will look at this issue in depth and read the APPG’s report following its launch today—I am looking forward to that—so that all the 230,000 people living with blood cancer can be confident that the Government are doing their utmost to give them the best chance of living.